Having an Answer

At her fifteen month appointment, my rainbow baby, Autumn, still wasn’t walking.  She had been late to pull herself to standing, and while she would cruise along furniture, she was not even close to letting go and standing alone.

My pediatrician has always been fairly laid back in terms of milestones.  When Theo was not saying many words by 15 months, she said “Let’s wait until 18 months and see where he’s at.”  Sure enough, by 18 months he had more than exceeded the expected number of words (and has never stopped talking since).  She makes little comments, such as “I like what you’re doing with them” that give me a warm fuzzy as I leave the office after a well-child visit.  At Autumn’s nine month appointment, when she wasn’t yet pulling herself to stand or bearing much weight on her legs at all, the pediatrician said “Well, we’ll see where she’s at by a year.  She has until 15 months to walk.”  A year came and went, and she had made progress.  More progress by 15 months, so I figured that the pediatrician would say “Let’s just wait until 18 months.”

I was surprised, therefore, when the pediatrician told me that she wanted Autumn to start physical therapy.  I had heard from many parents who said that their children did not walk until 15 months or later.  I would joke with other parents, saying “Well she has two parents and two older brothers to always bring her anything she needs, so what is her motivation to walk?”  Secretly, I wondered if we had impeded her walking ability by not encouraging her more.  Always picking her up and carrying her to wherever she needed to go.

We had an initial consult with the physical therapist, during which Autumn cried most of the time, despite the P.T.’s best efforts to entertain her.  It wasn’t until the second appointment that the P.T. was able to do a better assessment of Autumn’s legs.  She told me that Autumn has low muscle tone, and that it was something she would have been born with.  Muscle tone is not something that can be changed, but muscle strength can be – and Autumn will need to work a little harder to build up strength, to make up for the lack of tone.  As she gets older, we may need to encourage her to be more active than other kids, to maintain the strength in her legs.

In a way, the assessment was a relief.  It wasn’t anything that I did, or didn’t do.  I often worry that parenting a baby after loss has led me down a different path, raising my child differently than I did the other two.  I also guessed that my pediatrician sensed that something was off, and that was why she insisted on the physical therapy rather than a “wait and see” approach.  For that, so that we could begin the work to help Autumn walk, I am grateful.

We have an answer.  And I sit in on my support group meetings with parents that have experienced loss among many parents who don’t have an answer.  Myself included.  Some have very specific, known reasons that their babies died – genetic issues, pregnancy complications, incompetent cervix, etc.  But many – many – do not know, and probably will never know.  Some continue to see doctors and specialists in search of answers.  I underwent a full battery of tests after losing Nelle, and then again after losing Iris.  Nothing.  I saw multiple doctors in my regular practice, two specialty practices, and a genetic counselor.  Nothing.

As we talked in a meeting about knowing versus not knowing, I said, quite decidedly “And I will never know.”  Someone suggested that maybe I could know, someday.  Medicine changes all the time and the field knows more now than 20 years ago.  I thought this through quickly: how would I know?  Advancements in medicine would really only allow me to be tested further.  There are pathology reports for both Nelle and Iris, but their bodies have been turned to ashes so there is no further testing that could be done.  Even if I were to be tested, to what end?  I am not having any more children.  There is no way of ruling out that what I experienced wasn’t “point-in-time” (like an infection or something similar) and that even with new testing available that it would reveal anything that had occurred in the past.

I will never know.  I am not going to look for an answer.  I am not sure that an answer would make me feel any differently.  In the back of my mind, I still, still wonder if it is something I did.  Of course, my head knows that this isn’t true.  I am able to tell myself this about 99.9% of the time.  But as the days march toward Nelle’s birthday, or Iris’s birthday, I find myself saying “I’m sorry, baby girl.  I’m sorry that I did not keep you safe.”

Then again, I always wonder that if – by some crazy, cruel twist of the universe – that if I found out that it was something I did…. or something that could have been prevented… I do not know if I could handle that information either.  That guilt, that there could have been an alternate ending… I am fine with the place I am in, that I do not know, and telling myself that I have no way of knowing.

Having made peace with that, it doesn’t prevent me from wanting other answers.  If one of my kids comes down with an illness, I still wonder if it is something more serious.  When I experience hives, as has been an irregular occurrence since I was in grade school, I want to know what triggered the reaction.  And now that I have an answer for why Autumn isn’t walking, I realized that I wanted to know.  Or more specifically, I wanted to know that it wasn’t something I caused.